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Purpose: Yolŋu are Aboriginal Australians from northeast Arnhem Land in the Northern Territory (NT). Machado-Joseph disease (MJD) prevalence in the NT Aboriginal population is the highest in the world. Yolŋu living with progressive dysarthria associated with MJD could benefit from augmentative and alternative communication (AAC). However, there are no aided AAC systems in Yolŋu languages. This research aimed to explore the views of Yolŋu with MJD about communication, speech-language pathology (SLP) services and AAC. Method: A collaborative, culturally responsive research design was informed by Indigenist Research methodology and Constructivist Grounded Theory. Yolŋu with MJD ( n  = 10) and their interested family members ( n  = 4) participated in interviews and created visual representations of their social networks. Data were analysed through an oral interpretive process with Yolŋu researchers. Result: A Yolŋu metaphor, Goŋdhu "Building understanding by hand", emerged as a culturally meaningful way to represent the core understandings required for speech-language pathologists (SLPs) to work effectively with Yolŋu with MJD. Elements of this metaphor include seeking to understand the complex lived experiences of Yolŋu with MJD, and working with families to explore the potential benefits of SLP services and AAC. Conclusion: Yolŋu with MJD and their families want to work collaboratively with SLPs to develop bilingual AAC systems and culturally responsive SLP services that build on strengths of Yolŋu culture and kinship to improve communication opportunities and participation.

Yolŋu (Aboriginal Australians of northeast Arnhem Land) are interested in developing augmentative and alternative communication (AAC) systems in their own languages to support communication opportunities and participation for their family members living with Machado–Joseph disease. Designing AAC systems in Aboriginal languages requires consideration of unique linguistic and cultural elements. Participatory action research in strength-based communication contexts was carried out by Yolŋu and Balanda (the Yolŋu word for non-Aboriginal people) researchers working together through a collaborative intercultural process. Culturally responsive literacy, language, and AAC activities were used to develop four prototype Yolŋu AAC sytems for Yolŋu with varied literacy skills. Data were coded using gerunds to identify and focus on action in the data. Reflective and analytical collaborative, oral group discussions were used to identify key considerations and, ultimately, a Yolŋu metaphor for the research. Yolŋu language, culture and worldview impacted all aspects of prototype design and decision making. Salient considerations related to representation, organization, layout, and access, are presented. Clinical implications and future research considerations are outlined. [ABSTRACT FROM AUTHOR]

Yolŋu, Aboriginal people from Arnhem Land, Australia are at risk of Machado-Joseph disease, with progressive loss of speech. Yolŋu are interested in developing augmentative and alternative communication (AAC) systems in their own languages. This research aimed to develop a culturally responsive process to explore and create a core vocabulary word list for Yolŋu adults living with the disease for inclusion in AAC system prototypes. A list of 243 Yolŋu words and morphemes was created. In this highly collaborative, mixed methods, participatory action research, Balanda (the Yolŋu word for non-Aboriginal people) and Yolŋu researchers conducted cycles of transcription and analysis of a language sample, with oral group discussions to identify which words to include, omit, or add, based on Yolŋu perceptions of the structure and use of their languages. A Yolŋu metaphor, Gulaka-buma ("Harvesting yams"), was identified by Yolŋu researchers to represent and share the research process and findings. Three key themes were identified that summarize the main cultural and linguistic considerations related to changes made to the core vocabulary. Study findings emphasized the role of language as an expression of culture and identity for Indigenous peoples and the importance of considering cultural and linguistic factors in selecting vocabulary for AAC systems. [ABSTRACT FROM AUTHOR]